Sunday, December 28, 2014

My view of LBD

Much of my writings have been from the prospective of me teaching about LBD.  I figured that out as my wife was driving us home from the Commissary.    I often review my life in those quiet moments.  So, I decided to try to reflect on my emotions and perspective on how LBD impacts me. personally.

As I look back, this journey started with memory loss and some rigidity on,y left side.  I ignored it for a while and then told my wife and then my GP in Virginia.  He really keyed on the symptoms and sent me to a great neurologist.  At that point, I thought that nothing would be found.  But as the testing went on and became more intrusive, I started to wonder what the outcome would be.

Then, the neurologist sent me to The University of Virginia for a second opinion.  That really caused me to pause.  That testing and my neurologist's testing agreed and she told me she was convinced I have Lewy Body Dementia.  Linda and I were surprised and somewhat shocked.

My neurologist, who was an expert on this disease immediately prescribed Arecept and Namenda.  I now take Razadyne in place of Arecept, but they are the same thing.  Studied have proven taking these drugs early in the LBD journey help to defer the progression of the disease.

Now, four years down the road, I have seen many changes.  My reaction to the disease remains mostly the same.  I see what is happening to me as "interesting"!   I realize that seems weird, but it is how I view things.

here have been issues that depress me.  For instance, not driving, loosing my independence, and even the fact that I had to retire because I could no longer do my job effectively without extraordinary assistance.   Actually, I would have needed someone to do my job while I napped!  But then, at this point, who would drive me to work and tae me home?

The hallucinations did not bother me in the beginning.  The were small animals that I knew were not real.  But, seeing a man, in color, real as any man, walk across a busy interstate in front of me, as I drove shook me.  If I were closer to him I would have stopped or swerved to avoid hitting him and that would have caused an accident! You can see why  don't drive anymore.

I have written before about my depression over my loss of independence and friends.  Yes, I have friends, but they all olive in Virginia!  And I am in Florida.  That will not change.  That God for email and telephones.  This disease causes other issues besides memory failure and hallucinations.  For instance, I spend much of my days in another place and time.  I have day time dreams, while I am awake, that I am in the Navy, stationed on a ship, doing what I used to do.  That time continues to be comfortable to me.

I am depressed.  Some of it is chemical imbalance in my brain and some pf the depression is over my loss of independence, and isolation.

I also find conversations with new people difficult.  I cannot discuss things not related to my Navy experience since my mind lives in those times.  I am always asking people I meet here at Azalea Trace if they are Navy, where they were stationed and what the do.  This is difficult for others to deal with.

Then there are the "out of character" comments and gestures.  These started before my diagnosis.  For instance, at a Church business meeting, I would take the agenda paper and make a hat out of it and wear that hat!  My wife would "yell" at me.  She did not understand and neither did I.    Looking back, we both understand now.   There were other unscripted foibles too.  But they slip my mind right now.

I have said before that I am now in the second half of this disease and I am glad we live in this community.  I am not free to experience this disease without defense.  Before, I had to "pretend" to be normal all the time!    Why, because I knew most CCRC communities would not accept me unless I was a "Full Up Round"!   Now, when I do not feel mentally whole, it is OK.   I can be where I am without issues.

Then there is the physical side of LBD.  Again, I have written about the portion of the brain that controls the autonomic functions.  I suffer from constipation, urinary control issues, aspirating and choking, busy hands and now, more stability issues when I walk or stand and turn.  I have also lost much of my strength.  My legs have atrophied as have my arms.  I cannot life or carry heavy things anymore.  As I say; It is what it is.

All of these are aggravating at best.  They cause interruptions in my life but they have not, "YET" cause me a big issue.  They will!  I will fall and need medical attention sooner or later.  I live in the perfect place to meet those needs.

So, how am I dealing with Lewy Body Dementia?  I think I am doing well.   I am still mentally connected enough to discuss these issues most of the time.  Yes, there are times I cannot find the words to describe my emotions or feelings.  Yes, I am disconnected from the world around me.  Yes, I depend on my wife for more and more.  But, God is still giving me the ability to serve him with a Bible Study and I am hoping to find other Ministries here at Azalea Trace.  I refuse to give in to LBD.  Yes, the disease is winning.  Yes, I am willing to let LBD progress now that I live in a CCRC.   But, I will still use the abilities God reserves for Him for His glory.  That is what keeps me going!

I am still not angry about the disease.  I am not angry because elf the effects of LBD.  I am not even angry about not driving or loosing my independence.  Depressed over these things?  Yes.  Angry?  No.

What does the future hold?  I guess we will have to wait and see.  I hope you will stay with me as we take this journey together.

Friday, December 26, 2014

Settleing in at Azalea Trace

We have been here at Azalea Trace in Pensacola for just over two weeks.  We are unpacked, pictures up, and settled.   We took two long walks today and even found the second pond on this 122 acre campus. It is big enough to have a fishing pier.  But, there are signs everywhere warning you to "Beware of Snakes!"  Well, this is Florida.

Even the two miniature poodles love it here.  We got up this morning and decided to eat breakfast in the dining room.  Naturally, the meal and the fellowship were wonderful.

Then, today was our first house keeping day.  Our apartment was expertly cleaned by a very friendly, caring person.  We could not ask for anything better.

To say we are happy here would be an understatement.  The questions I have are; why didn't we do earlier? And why doesn't everyone do this? Now both questions are without answers.  We moved here as soon as God had it planned for us to move here.  And, this life style is not for everyone.  I understand that.  But, boy am I happy here.

Today is warm enough to be shirt sleeve weather!  Walking was a pleasure, and I even hit about a dozen balls at the driving range!  Again, that is part of our community also!

The furniture store that we purchased our couch and entertainment center from called and told us our furniture would be delivered 2 January!!  That is three weeks early!  Another pleasant surprise.

All in all, everything is going great and we are really beginning to feel at home her at Azalea Trace.  While I have noticed some stability and memory issues, I am more relaxed than I have been in a long time.  This was the best decision for us.  More later.

Monday, December 22, 2014

Honey. I lost the car?!

Today, we went to our house that we sold and cleaned the entire house in preparation for the closing.  We had some things left to bring over to Azalea and we loaded them into the car, along with the cleaning supplies, vacuum cleaner, and two miniature poodles.  After all, I could not leave them home alone for several hours, could I?

When we got back to Azalea, we unloaded the things to go in the apartment, and then I drove the car to the basement entrance to unload the things to go in storage and to the Azalea Store for sale.  It took several loads and some creative packing in our storage cage, but I succeeded.  Then, i took the shopping cart back that I used to move the stuff.  Took the steps to the first floor and got our mail, and walked down the hallway to our apartment.

Everything was good until I remembered the car.  Where did I leave the car?!  It was at the loading dock near the basement entrance.  Not a goo place for long term parking.  So, I had to go get the car, move it to our parking lot, and then go into our apartment.  Oh yes, I had to admit to my wife I lost the car, for a few minutes.

I was doing so well, and I enjoyed driving the car the 200 feet or so.  As you know, I no longer drive on the road, but in the parking lot or on the road in Azalea Trace's compound, I will, on occasion, drive those few feet.

Loosing the car is humorous but it is also a reflection of where I am.  I do things in order.  My mind organizes what I am supposed to do in steps.  As long as someone does not interrupt my steps with other things to do or social conversation I can accomplish that task, most of the time.  While I was unloading the car and moving things to our storage cage, I met and talked with a few residents.  But, I always got back on task, I thought.  When all the steps in my task were complete, I returned home.  What were the last steps?  Get the mail and return home.  OOPS!  I forgot, park the car.

Again, there is some very valuable insight into the workings of the mind of a person with dementia here!  Do not let this wisdom slip from your fingers.  You will be better equipped to understand your LBD patient if you understand my dilemma of today.

Where am I now, in my power recliner, watching Monday Night Football.  But, I bet I fall asleep before half time!

Sunday, December 21, 2014

What it is like to have Lewy Body Dementia: Update

Lewy Body Dementia is a little know disease that second only to Alzheimer's for frequency in the dementia world.  But, as more is being learned, the connection between Lewy Bodies and all other dementia's and Parkinson's is being drawn.

That being said, it took the death of Robin Williams to bring the mention of Lewy Body Dementia to the forefront.  Not even the death of the perennial Top 40 Disc Jockey, Cassey Kasum brought Lewy Body Dementia any notoriety.

All of us with Lewy Body Dementia (LBD) suffer from depression, anxiety, fear, and anger, caused b the unknown of our disease.  Some of us, like Robin Williams, cannot deal with those issues and choose to commit suicide.  Other, for reasons I will not speculate on, can stand our ground and make the best of a bad situation.   Many times, various doctors that I visit ask me if I am suicidal or homicidal.  I always answer no to the first and no, I like women, to the second!
You have to see the humor in that!

But, that does not mean I am immune to the stress of LBD.   For instance, I feel like a prisoner because I have no independence!  I cannot drive.  I have no bank account, no credit card I can use without my wife seeing what I am doing, and no time alone.   I cannot even manage my own medicines!  I am not complaining.  I am merely stating the facts.  Heck, I need my wife to take me to get a haircut.  I have not been that dependent on another person since I was 16 year old.

Besides all the horrors of LBD, i.e. Hallucinations, lost memory, stability issues, wet pants, getting lost, repeating the same story, drooling, aspiration, sexual dysfunction, constipation, depression, anxiety, and other issues I forget, the loss of my manhood, my virility and vitality, and ,my independence is the most frustrating and embarrassing issues of this disease.  I am not the man I used to be as my wife often tells me.  I have lost most of my body strength.  My arms and legs have atrophied and the skin hangs on y arms and chest.  Lewy Body is robbing me, day by day, of who I was.  And who I am becoming, I do not like! 

I suspect Robin Williams saw who he would become and did not like the prospect.  Again, just my uninformed opinion.

As I have said, the most frustration, emasculating, impact of LBD is that it has reduced me to a dependent, prisoner, of my keepers.   My wife could give me any pills and I would take them.   She is in charge of me.  I do not determine where we go what we do, or who we do it with.  Now, my wife tries very hard to include me in decisions.  But, that is more for my emotional well being than any need for my input.  And, if I disagree with her decision, direction or plans, I am quietly over ruled or ignored.

To be fair, when I was in charge, I did things much the same way. I know; "What goes around comes around!"  I guess I never thought I would be dependent!  Heck, I always thought I would die on active duty!  But now I am dependent on the kindness of my wife.  Lucky she is a wonderful, loving, caring, wife!  But, all that niceness cannot erase the sting of my loss of manhood and independence.  She knows that, and continues to be gentle with me.

So, what is it like to have LBD?  Terrible.  But, it is the place I am now and I need to be happy where I am.  And as tough as that is, I am trying to be happy.  That is all I can do.  Try!

Saturday, December 20, 2014

Our first 10 days in the CCRC

We have been residents of Azalea Trace for 10 days.  We are beginning to settle down and set our new routine.  The apartment is looking like an organized home and we are both sleeping well.  We have met a number of interesting people and we enjoy dinners in the dinning room.  We normal eat every night with different people.   I find I look forward to different dinner conversations.  It is energizing to discuss issues with people of differing opinions and experiences.  And dinner itself is gourmet quality.  Tonight I had bourbon honey glazed pork tenderloin!!  It was tender, tasty, and wonderful.  My diet is definitely suffering here!

We eat our breakfast and lunch at our dining room table!  A habit we stopped for a long time.  Yet, in this apartment eating at the table is comfortable and convenient.  So, another positive change in our lives.

We have not been in the pool or the gym yet.  We did look at the Chapel today.   It is very nice.  I need to find the billiards room and the card room.  I her some folks play pinochle.  

Even the dogs are settling down.  But, we still crate them when we go out for more than a meal.  But, they are barking less and enjoying our many walks.

Tomorrow, our son and his family are coming for dinner.  They have not had the pleasure of our dining room yet.  And, tomorrow night, one of the  three entrees is Prime Rib!!

Monday, we will Finnish with the house and make it ready for the closing.  

How am I doing?  Remarkably well.  I have had some hallucinations and I have noticed more distant, spacey, mental feelings.  I spent a good part of this morning trying to remember the job I was going to finish.  It was about noon that I finally realized I was dreaming of the job and did not have anything pressing to do.  Also, walking the dogs in the dark is unnerving for me.  I am more unstable when I walk, so the dark makes that even worse.  It is just a matter of time before I fall.   Good thing the grass is soft.

But, I feel more relaxed as I have written earlier.  This feels like a secure, home to me and that is good.  I am adjusting well.  I believe the real test will be after the Holidays when my wife is gone on Tuesday and Wednesday mornings.  How I react to they, will be the telling thing.

One more point.  We made the choice to move to a Continuing Care Retirement Community.  I knew this was the answer for the issues that will most likely impact us.  So, there was no push back from me.  My wife was not sold on the idea until we found Azalea Trace.   This community made her feel at home.  We met a woman moving is and her daughter the other day.  The Mom was not all that happy about moving in.  He daughter was obviously the one pushing the Mom into the move.  I believe, the Mom will be happy, but I see a period of anger and adjustment for her.  It is better if the people moving into the CCRC actually WANT to move there.   Waiting to find a community when the parent is unable to make the decision on their own is never going to be good.  Look early and often.  Do your research and find a place that works for the person living there.  Then move in as soon as possible!!  Everyone involved will be better off.  Trust me.  

Thursday, December 18, 2014

The impact of moving continues

Tonight, I had a few pictures and a key holder to put up.  No big issue, even now.  Then, there was the change of address issues!  That is a never ending terror!  I tackled the DMV online tonight.  I did this while I was being asked a thousand questions by my wife!  But, even with the antiquated website Florida has, I won!  Of course, voter registration is another issue.   I suppose, if I were an illegal alien or a terrorist, and I was registering as a Democrat, I could register by CB radio!!  But, we have to go in person or SNAIL MAIL  our change of address to them!  Wow.

This is our last move.  My last change of duty stations in this life.  My wife has informed me that we have moved 18 times in our almost 43 years of marriage.   That is clearly too many times.  But, I cannot go back and change that, even though I wish I could.  But, this is the last move just based on the cost of moving here!

But, these moving issues never bothered me before.  Maybe because my wife did them in the past.  But, she is trying to keep me involved in our life and she thought change of address issues were in my wheel house.  So, I have taken this issue on, or maybe it would be better said, the issue has taken me on!

I just do not have the mental capacity to deal with things that require patience or things that require concentration.  Especially after a busy day.  Again, these are just normal LBD issues.  But, that's what I write about!

Loud noises cut through me like a knife!! And other LBD issues.

It is just short of 10PM.  I am watching football.  My wife was in the bedroom, doing what ever, and all of the sudden BOOM!!   I felt like a knife went through my entire body!  I jumped and screamed her name.  She apologized for dropping the cedar chest lid.  No one realizes how loud noises impact me.  I am vibrating inside still.

Another issue is riding in the car.  When I think cars are too close, stopping too quickly, or are puling out in front of us, I flinch!  I told my wife tonight I really do not like riding in the car anymore!   Truthfully, I never want to leave our retirement community again!  These drivers are crazy!  Running red lights, pulling out where there is no room, cutting in front of you and then stopping!  I did not drive that bad when I was drunk!

I see more and more issues increasing with how I react to anything that is out of my comfort zone.  I guess that is just the new normal.

Wednesday, December 17, 2014

We are moved in!!

The move is done!  Everything is put in place.  I am even ready to get back to our ministry at Bay Breeze Assisted Living Facility!  We are back in service!  Wow, what a week!

Now, this was a normal move for us.  My wife informed me it was our 18th move!!  I did not know that, but she did.  The real fact is, it is our last move.

How have I done?  Fairly well.  I am very relaxed here at Azalea Trace.   From my prospective, my fight to appear normal is over.  I can relax, knowing I am in a place that will care for me, or Linda, regardless of what happens.  And that reality is liberating!

Ever since Dr. Bowles told us of my diagnosis, we have lived in the shadow of "What if?!"  We looked and toured many CCRC's with many different reactions.  Some would not admit me because of my diagnosis.  Some did not meet our needs.  Some were TOO expensive.  Some were just not for us.

Then we found Azalea Trace and we both knew this was the place for us.  And, Azalea Trace, with my full disclosure, accepted me!  But, we were on the waiting list for over a year.  That was a stressful time because we saw my disease progressing.  We both knew that I would not be admitted if I took a larger downward turn.  But, in God's perfect timing, we were offered an apartment, better than we dreamed of, and moved in before the end of the year.  God is good.

So, the move was disconcerting, caused me some anxious moments, and anxiety, but I am now settled and comfortable.  So, this move IS good.

Now, we can enjoy some of the fun things, like the heated indoor pool and hot tub!!  Merry Christmas.

Monday, December 15, 2014

Progress, part two

Well, all the boxes are unpacked, the furniture is in place, the new adjustable Tempurpedic bed is here, most of the pictures are hung, and things look a lot like home!  I still can't find most things, but Linda can  I do know where emu coffee cup is and the coffee pot.  I have taken a shower, so I know how that works, much to the relief of most around me.

Another BIG issues off our plate is my large gun safe, the one that weighed 800 pound, was moved to my old neighbor's home today.  We hired the same folks that delivered it.  They were great.  So that issue is done.  We still have t clean the old house and I have some sorting to do in the garage.  That will wait a couple of days.

Tonight, we enjoyed a very good meal in the dining room.  Tilopia for my wife and New York Strip Steak for me.  Have I mentioned the food here at Azalea Trace is great?!

My wife has gone to bed early and I am up, blogging and relaxing.   I will probably watch the Monday Night Football game.  We learned tonight that our two senior citizen poodles have been making noise when we are gone.  No problem, we will crate them when we are gone from now on.  We had to do that in the Senior's Apartments in Virginia Beach before we moved to Florida.  We put them in the crate when we went to dinner tonight and they seemed OK with it.  They will have to adjust.  So will I.

Returning to our apartment after dinner, we met a lady who has early Frontal Lobe Dementia.  She is having memory issues and wants to get together to compare notes.  I plan on keeping that appointment.

I feel much less stressed here.  I do not feel like I have to be alert all the time.  I feel totally secure and I am sleeping most of the night.  My stability is worse.  As I tell Linda, the floor moves.  Somewhat like being on a Destroyer in moderately rough seas.  I did fall the other day because of this increase in my stability issues.  No big deal.

We are settling in nicely and I believe both of us are adjusting well.

It is interesting to me, how God's hand has been in this move from many years ago.  God enabled us to save for our retirement.  God gave me a career that provided me a good retirement.  My Wife worked hard, with God's help, to get her Master's Degree in Library Science and worked for 30 years as a Librarian which gave us another retirement income and more savings.  God provided us with the wisdom to sign up for the Civil Service Long Term Care insurance when we were young.  We are in Azalea Trace because God provided for us.  He exceedingly met our needs when we were our neediest!

As I have written before, all Continuing Care Retirement Communities are expensive.   Some, more than others, but that is all relative to the economy of the area the CCRC is located.  God placed us in Pensacola to see Azalea Trace and place us there, where the money HE provided will go the farthest.  God IS good!

So, as you can see, I am content and relaxed, finally.  I now do not have to fight Mr. Lewy!  I can relax and that is a blessing in itself.  More later.


Thursday, December 11, 2014


We are moved in!  The boxes are starting to disappear, and our apartment is beginning to look like a home.  We had a good move, under budget, yesterday.  Everything was in the apartment by 2PM.  Much of this success is because my wife did so much packing and organizing.

Of course, we did not get rid of enough stuff.  So, more kitchen equipment will need to be culled.  But, that is small stuff.  Our new bed is not here yet, neither is the couch or the entertainment center,  But, we slept in our bed and have television to watch.

The hot water heater did not work, the thermostat on a NEW unit failed.  But, no hot water was no issue because we did not have a shower curtain rod until this afternoon.  Now we have both and I am going to take a shower tonight.

Another delay was our refrigerator.  I arrived today!  So now we can move our food over tomorrow.  All little annoyances, but all in all, a good move.

I now have to walk the digs instead of opening the back door to our fenced in yard.  The walks are good for me and they seem to like them.  They are also adapting to apartment living.  The seem to accept us leaving and are keeping quiet in our absence.

Just four more boxes and we will be unpacked!  Not all put in place, but unpacked!  The closing of our home sale is 5 January.  SO, things are coming together.

I am doing fairly well.  During the pack out, I was disoriented and felt like I was drunk!  I could not concentrate on what was happening.  Our son was with me and was a great help.  I am still somewhat confused and I am more unstable when walking.  SO, the move has caused me issues, but they were expected.

My wife continues to unpack and work hard.  I try to help but I tire easy.  Still, we were up until 1AM last night unpacking.  I hope we go to bed earlier tonight!

I think this will be good, once I find my underwear!  I do have coffee and I have my coffee cup.  What more could I need.

More later.

Saturday, December 6, 2014

The emotional stress of the move on me!

This blog is about the impact Lewy Body Dementia places on an individual patient.   More specific, how I am doing with the stress and emotions of the move.

The last couple of days my wife has been focused on packing the collectibles and personal items in out home.  Then, we sorted out the things we know will not fit into our new home.  That lead to the dreaded "Yard Sale"!  That was today!

We were up at 5AM!  But the was up most of the night organizing, sorting, and working on her Bible Study that she still has to lead on Wednesday.   She is a discussion leader for Bible Study Fellowship.  An international Bible Study started by a missionary named Wetherell Johnson.

Today, was 6 hours of "Show Time"!!!   Dealing with people that want the best things for pennies on the dollar.  But, we sold most of what we need too.  Also, my neighbors came out in force to purchase many things without even a thought of bargaining.  I actually had one neighbor give us MORE than we were asking.  I really do have some great neighbors and I will miss them.

We have also taken a couple of loads to the new place insulting hanging clothes.  We will carry more over tomorrow after Church and on Monday.  Tuesday will be busy getting ready for the big move on Wednesday.

So, how am I doing?  I am exhausted!  I am very grouchy and upset.  My poor wife has been snipped at and yell at more than a few times.  When things go wrong, or seem wrong to me, I react, without social filters!!   I cannot find anything in our house, our "Brain Center" where all the pills, electronics, and phones live, is gone!!  We have sold most of the furniture that will not fit ion the new place and taken down the art work from the walls, so the house echoes!!

My blood pressure is up, I am confused, and I do not know where many things are.  Then, there are the constant questions, taskings, and directions, that I need to react to.  Find the home warrantees, move this, build me a box.  It is all required parts of moving and I have been through it many times.  Most of our moves were self-inflicted, by me.  Even this one is my initiation.  But this one is different in that I cannot life anything because of my left shoulder, I cannot drive anywhere my self, and I cannot process more than one task at a time!   All of that stresses me!  I feel like a prisoner!   For instance, I need a haircut, desperately!!   Not on the schedule.  Yesterday, my wife needed more wrapping paper to pack with.  So, to keep her on schedule, I walked to the corner and bought some from the U-Haul store!  Walked!  Yes, it is good for me, and yes, I did not get lost.  But, I will be glad when this is over and we are settled.

Last of all, I feel frustrated and depressed.  I am mentally questioning all of my decisions.  That makes me even more frustrated and depressed.  So, you see where I am right now.

I will keep you informed.  I believe Wednesday will be a tough day, even the climax of the move.  Then, things will start to get back to normal, I hope.  

Wednesday, December 3, 2014

We are now residents of Azalea Trace!

Well almost!  We took custody of our apartment today.  We paid the remainder of our entrance fee, a check bigger than any one I ever saw, well enough wrote and was on the hook to make good, and we got our keys!  Of course, there are still some things to get done, like any new home.  And the apartment has not had it's final cleaning.  But all that will be taken care of.  Oh, our refrigerator is not here yet.  Again, it will arrive soon.

So, now no more free lunches!  All meals are on us.  And, now we have to follow the rules of the community.  For instance, my neighbor called me on my cell phone while we were eating lunch.  I answered the call, at our table.  My first demerit!!   They were nice about it.  But standing in the corner with a dunce hat on is my next punishment!

The next 6 days we will move small items into our new home.  Clothes, small boxes, nick knacks, and other small items.  I cannot lift anything of substance with my left arm.  I have a torn rotator cuff that I have known about for about a year.  It has become much worse and I now cannot even lift a coffee cup with my left hand.  I had put off the surgery until we were moved into Azalea Trace just in case I have a negative reaction to general anesthesia.  LBD patients have a 60% chance of having a significant mental decline after general anesthesia.  So, our caution is well founded.

If you are interested in these issues, check out the site.  The Lewy Body Dementia Association has numerous reports from caregivers, in the Community section, describing the cognitive downturn of their LBD patient in conjunction with general anesthesia.  Also, they have a few clinical studies supporting these reports.

We will actually move in next Wednesday.  I will keep you informed.  More later.